Jefferson Headache Center & Chronic Headache

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RIB328
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 10/29/2009 5:47 AM (GMT -7)   
I'm new here & I saw that someone went to Jefferson, but now I can't find the original post, so please forgive me for starting a new post.

One Sunday afternoon - August 23rd, I was driving home & got attacked by a migraine. I got home alright, took my Relpax & went to bed in my nice dark room with my eye mask & relaxation CD. I woke up Monday morning with the same darn migraine, so I took another Relpax, but had to go to work. By Tuesday, it wasn't gone, so I called my neurologist and she gave me a Prednisone taper. I took half the day off work & slept. By Saturday, it wasn't gone & I went to the ER... they gave me Maxalt. That hasn't worked for me in years, but they didn't want to listen to me. After all, my trusty Relpax didn't work, either. I then spent three more days in the hospital getting the DHE cocktail and Torodal for pain. I was discharged in worse pain than I arrived in (10/10).

Now, nine weeks later, I'm still at a 10/10 daily. I've switched over to the Jefferson Headache Center & their treatment plan includes me going BACK to the hospital (Methodist) for 6-7 days.

Has anyone done this with Jefferson? If so, what does it include? If DHE doesn't work, what else do they have in their arsenal?

Thanks,
Rachel

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 10/29/2009 12:50 PM (GMT -7)   
Neuroleptics are commonly used, like chlorpromazine, haloperidol, and droperidol. They also do other anti-inflammatory medications. I've heard of people being given depakote and triptans in the hospital, though I didn't do that. These are the primary abortive treatments but they usually administer many other medications alongside. DHE is usually administered with diphenhydramine and an antiemetic. They'll frequently use clonazepam and lorezapam in conjunction with some of these therapies. Additionally they sometimes administer nerve blocks and/or trigger point injections during a hospitalization.

So those are the more common treatments. For more severe cases they try a 7-10 day IV Lidocaine infusion and more recently they started doing 5 day IV ketamine infusion.

I may be forgetting some others. If you search the forums for topics with Jefferson or JHC in their names you should find a lot of information.

Ben
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Wellbutrin XL, Oxycodone, Oxycontin, Concerta (Methylphenidate), Clonazepam, Rozerem, Magnesium (1200 mg/d), Riboflavin (400 mg/d).

PRN: Ketamine nasal spray, Toradol IM, Celebrex, Haloperidol, Lodine, Zofran, Phenergan, Ambien CR
rarely: Migranal, Thorazine, DHE IM, Droperidol IM, Reglan, Provigil, triptans (Imitrex, Maxalt, Relpax, Zomig, Axert, Amerge)

I can be contacted personally via email at korbnep:healingwell@gmail.com.


OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 11/1/2009 6:05 AM (GMT -7)   
From my experience, doctors will treat you as a dramatist if you say you have 10/10 pain for a headache and not take you very seriously. 10/10 pain would be from aneurysms, femur fractions, gun shot wounds, etc.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 11/1/2009 6:50 AM (GMT -7)   
And that's a real problem, since most people have never had aneurysms, femur fractures or GSW's, so have no basis of comparison. The question asked is "On a scale of 1 to 10, with 10 being the worse pain you've ever had..." It's entirely likely that someone could feel a serious headache is the worse pain they've ever had.

Doctors need to start listening to what they ask and what patients tell them. I've never had a fractured femur, but I did have a fractured tib/fib and walked on it for nearly three months before seeing a doctor. Conversely, I've had headaches that put me in bed whimpering like a baby.
Judy
Co-moderator, Ulcerative Colitis
 
Diagnosed in 2001, finally in remission since March 2006.
Mesalamine is not my friend and steroids are from the devil.
Remicade has been my miracle drug.


RIB328
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 11/1/2009 12:39 PM (GMT -7)   
Ben - thank you for your reply. It's good to know someone here who has done the same treatments. I did DHE in my previous hospital stay and failed on that. Then I did outpatient ketamine as a clinical trial at Drexel and that didn't help much. I think it was a much lower dose than Jeff does inpatient. They were quite perplexed that I got it as an outpatient. Dr. Young gave mr nerve block shots while I was there and talked about IV lidocaine. I just didn't know that would last the whole week and therefore I'm nervous for the unknown. Since you provide your email address, I'm going to email you.

GCoin and Judy - thank you for the info about 10/10 pain. On another board, they were just discussing the same thing. I've never had a child and I've been in a car accident. To me, this is the worst pain I've ever felt in my life. And as of today, it's lasted 10 weeks. So maybe if I tell them all that when they ask, it will mean more.

Thank you all for just being here. I've had a bad few days and I'm working up the courage to post about it. My husband tries to help, but he's just focused on the day I get out if Jeff "migraine free" that he can't help me in the now.

Rachel

Nomoremigraines
New Member


Date Joined Oct 2009
Total Posts : 17
   Posted 11/1/2009 4:40 PM (GMT -7)   
Rachel
 
I suffered my excruciating migraines for the last 15 years and finally after having headaches everyday I was checked for PFO/ASD.  If you will google PFO and migraines you will see that there has been a renwed interest in severe migraines and this heart condition.  I was in bed most days from the migraines.  I was diagnosed with ASD ((Atrial Septal Defect) and had it repaired 9/29/09 at UAB in Birmingham, AL.  I have been migraine free since my procedure! 
 
It is hard to get anyone to do the TEE (test required for diagnosis) with a bubble study (you can google also).  My Internal medicine Doc sent me to a Interventional Cardiologist for the test.  I am thankful that they found this.  Some of the symptoms are shortness of breath, severe migraines, general tiredness, no energy.  If you have a stroke you are checked for a PFO as this can be a sign you have it.  My Dr said it was a miracle that I had not already had a stroke.
 
I hope this will help give you another thing to check for that causes severe migraines.
 
No more migraines and thankful!

Nomoremigraines
New Member


Date Joined Oct 2009
Total Posts : 17
   Posted 11/1/2009 4:42 PM (GMT -7)   
Google PFO and migraines. If you suffer from daily migraines this could be what you actually have and the only way to check is TEE with bubble study. They say echocardiograms sometimes find it but I actually had 2 of these in the past that didn't reveal the PFO.

RIB328
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 11/1/2009 5:33 PM (GMT -7)   
Wow. How interesting. If the week in the hospital doesn't work, I definitely will bring that up.

I'm so happy for you that you are migraine-free!

RIB328
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 11/4/2009 1:00 PM (GMT -7)   
Am getting anxious as we get down to the wire. I'm over-packing because what I bring is in my control. I will be bringing my laptop, so if I can update you here that would be helpful. You guys understand "migraine speak" and we all understand venting. Sometimes I'm afraid my husband or my parents don't get that I just need to talk.

Ben - did you get my email? My address is rib328 at gmail dot com. I had trouble emailing to the gmail address in your signature line.

Rachel

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/6/2009 7:14 PM (GMT -7)   
No, I'm sorry, I didn't get your email. I wrote it out as it is so that gmail would highlight any messages sent to me from someone at healingwell but it can cause some problems. Just email me directly at korbnep (at) gmail.com
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Wellbutrin XL, Oxycodone, Oxycontin, Concerta (Methylphenidate), Clonazepam, Rozerem, Magnesium (1200 mg/d), Riboflavin (400 mg/d).

PRN: Ketamine nasal spray, Toradol IM, Celebrex, Haloperidol, Lodine, Zofran, Phenergan, Ambien CR
rarely: Migranal, Thorazine, DHE IM, Droperidol IM, Reglan, Provigil, triptans (Imitrex, Maxalt, Relpax, Zomig, Axert, Amerge)

I can be contacted personally via email at korbnep:healingwell@gmail.com.


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 11/9/2009 7:04 AM (GMT -7)   
korbnep said...
Neuroleptics are commonly used, like chlorpromazine, haloperidol, and droperidol. They also do other anti-inflammatory medications. I've heard of people being given depakote and triptans in the hospital, though I didn't do that. These are the primary abortive treatments but they usually administer many other medications alongside. DHE is usually administered with diphenhydramine and an antiemetic. They'll frequently use clonazepam and lorezapam in conjunction with some of these therapies. Additionally they sometimes administer nerve blocks and/or trigger point injections during a hospitalization.

So those are the more common treatments. For more severe cases they try a 7-10 day IV Lidocaine infusion and more recently they started doing 5 day IV ketamine infusion.

I may be forgetting some others. If you search the forums for topics with Jefferson or JHC in their names you should find a lot of information.

Ben

Can you explain more about the lidocaine infusion, ketamine infusion and DHE? Are these used to break the headache cycle? I know lidocaine and ketamine are anesthetic products. My headaches are not migraines. They are continuous bilateral temporal headaches that are quite severe and never go away. I have had this pain for over a year and been looking for answers for ten years. I have seen many dr. done many treatments and tried many medications, had work done for TMJ and still no answers to this pain. I am on long term disability now. What are the chances that my problem could be PFO/ASD?
Thanks for any help or ideas you may have.

Nomoremigraines
New Member


Date Joined Oct 2009
Total Posts : 17
   Posted 11/9/2009 8:42 AM (GMT -7)   

TMJPain,

It is possible that you could have PFO.  Migraine or severe  headaches are one of the main symptoms.  My neurologist said stroke was the only thing PFO's caused but then a month later my regular Dr sent me for a TEE with bubble study (painless) and I was diagnosed with it.  I  had an Amplatzer multi fenestrated 'Cribriform' device implanted by heart catheterization.  I haven't had 1 headache and feel like a new person.  I suffered with headaches nearly everyday for the last 15 years.  Go to Amplatzer.com and you can read about PFO's and ASD's.  They are also in the middle of a clinical trial for migraine sufferers. 

I keep reading all these comments about how everyone is suffering with their migraines and going in the hospital for treatment etc, but no one will listen to me about the PFO!  I'm telling you I haven't had 1 headache since the procedure 9/29/09. 

I hope someone out there will at least go to Amplatzer.com or google PFO and migraines.

No more migraines


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 11/9/2009 9:24 AM (GMT -7)   
korbnep said...
Neuroleptics are commonly used, like chlorpromazine, haloperidol, and droperidol. They also do other anti-inflammatory medications. I've heard of people being given depakote and triptans in the hospital, though I didn't do that. These are the primary abortive treatments but they usually administer many other medications alongside. DHE is usually administered with diphenhydramine and an antiemetic. They'll frequently use clonazepam and lorezapam in conjunction with some of these therapies. Additionally they sometimes administer nerve blocks and/or trigger point injections during a hospitalization.

So those are the more common treatments. For more severe cases they try a 7-10 day IV Lidocaine infusion and more recently they started doing 5 day IV ketamine infusion.

I may be forgetting some others. If you search the forums for topics with Jefferson or JHC in their names you should find a lot of information.

Ben

STill looking for answers regarging these forms of treatment, DHE??? and the lidocaine and ketamnine infusions?
Do they do these to break the cycle of the headache???

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/9/2009 12:45 PM (GMT -7)   
Sorry for the slow response.

tmjpain: Your headache problems sounds a lot like mine. I'm just short of seven continuous years now.

DHE is dihydroergotamine--administered intravenously it is considered possibly the most effective (most frequently effective that is) treatment for intractable headache. My sources for that is Wolff's Headache and Other Pain as well as what I've seen myself. It's a derivitive of ergotamine tartrate, which was the source of many of the earliest effective medications for headaches (Cafergot, for example). It's a vasoconstrictor, so it works on the the part of the headache cycle when blood vessels in the brain dilate and become irritated from the release of chemicals like glutamate and substance P that cause neural overexcitation and/or pain. Neural overexcitation is a huge component of chronic pain.

Lidocaine is a strong anesthetic that is administered over ~7-10 days, continuously. The simple explanation of why a strong anesthetic is used is that an anesthetic reduces brain excitability, mainly by blocking the neurons from firing. Because it's a strong, general anesthetic it's somewhat of a blunt treatment--it affects your entire system. Many people experience hallucinations during the treatment (I did not).

Ketamine is an even stronger anesthetic. It blocks neuron firing more than Lidocaine (it binds with high affinity to the essential NMDA receptors, blocking glutamate, the essential excitatory neurotransmitter involved in headaches). It correspondingly has an even greater systemic effect. It has dissociative properties which cause altered states of consciousness/mind and, again, frequently hallucinations (I sort of experienced these). It's actually probably the most pleasant of the treatments, in ideal circumstances, as you're in a mildly inebriated state for ~5 days. Hopefully it reduces or eliminates pain. But a successful course may just lead to a reduced or altered perception of pain--4-5 days of which after 7 continuous years of pain makes a big difference, psychologically at least. Ketamine treatments are considered experimental but they have been used to treat pain for many years.

I hope this provides the information that you were looking for. I'll try to answer any further questions.

Also, regarding PFO closure, you should know that while there have been some great successes, it has yet to be shown to be a reliable method of treatment. More importantly, PFO closure successes are much more common for patients with migraines with aura, as compared to without aura or non-migrainous headaches. This is not to say that it cannot help you but only that research has generally shown that your condition is less likely to benefit from the procedure. But that's a conversation that you should have with your neurologist.

Good luck!

Ben
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Wellbutrin XL, Oxycodone, Oxycontin, Concerta (Methylphenidate), Clonazepam, Rozerem, Magnesium (1200 mg/d), Riboflavin (400 mg/d).

PRN: Ketamine nasal spray, Toradol IM, Celebrex, Haloperidol, Lodine, Zofran, Phenergan, Ambien CR
rarely: Migranal, Thorazine, DHE IM, Droperidol IM, Reglan, Provigil, triptans (Imitrex, Maxalt, Relpax, Zomig, Axert, Amerge)

I can be contacted personally via email at korbnep@gmail.com.


RIB328
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 11/9/2009 4:39 PM (GMT -7)   
Hi Ben,

I've been bumped to a Wesnesday admission, so can you answer a few questions for me? Unfortunately, you seem to be the expert and the one frequently around.

If I've had other treatments or medications not work: DHE, neurontin, cymbalta, vivactil, verapamil, depakote, etc. do you think (and this is just your opinion... I won't hold you to the answer) they will try them anyway? I'm so afraid of losing more time to this stupid migraine. I don't know how you cope. I am seriously hanging on by a thread.

Also, do you know the dosing of the ketamine? At Drexel, since it's new for migraines (I was the third migraine patient to do it) and it's and outpatient procedure, they start at a 50 mg bag and only go up to 150 or 200 mg.

Thanks.
Rachel ~ in a lot of pain tonight, probably due to nerves

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/10/2009 3:16 PM (GMT -7)   
Hi again Rachel.

First let me address the ketamine question. I've done the ketamine admission twice now--the first time I was the second patient that they used the protocol on and the second time I went in was their eighth run. I mention this because the dosing was essentially the same despite the year in between. They follow the example of Dr. Schwartzman, a Drexel physician who has been using ketamine for pain disorders for a long time. Anyway, that's somewhat needless background but my point is that the dosing information that I give you will probably be accurate but, due to the experimental nature of the treatment, may have changed somewhat.

The essential number in their protocol is 1 mg/kg/hr--their dose ceiling. In theory this is the highest they will go with the ketamine over the 5 days of treatment. I've discussed exceptions and they were open to the possibility of going higher if we needed to (however, I've been with my neurologist for almost 4 years so I often be accorded some flexibility and input that some patients might not get). But we didn't go over, or even come that close to, the ceiling either time.

If I remember correctly they'll start at 0.1 mg/kg/hr. For me that was about 128 mg/hr (I weighed around 280 lbs then--in round one I was probably closer to 250 but that's another story). That translates easily over to 12.8 ml/hr pump rate of the IV (this is what you'll be seeing, so just remember that the actual amount of ketamine is 10x what you'll see on the IV pump). In the beginning they push the dose up fairly rapidly, increasing 0.1 mg/kg/hr each hour (my memory is a little foggy--it's possible that they step up in increments of 0.05 mg/kg/hr but I think I'm right). The dose increase is conditional however. If you are feeling mildly inebriated or exhibit nystagnus (which is essentially a "fluttering" of the eye when you're looking in your periphery), they'll stop at the dose that you're at and revisit increasing the dose again either every 4 or every 6 hours, again dependant on the same conditions (inebriation/nystagmus). The goal is for you to be in a state of mild inebriation. After some time your body builds tolerance and you'll eventually increase the dose again. So your dosing depends on your response to the drug and your body mass.

Regarding medications that you've already tried: That's somewhat of a tough question to give a direct answer to. Of course it will depend on your particular neurologist and, more so, your actual treatment history. Having reached the point some years ago of being told that I had exhausted all of their treatments, I can say that I did revisit some medications that I had already tried. But, at least while they have new options, you can probably expect that they'll want to try a new treatment. This doesn't necessarily mean that you may not be asked to go back on some of the medications you've listed. They like trying different combinations. Frequently this is a coupling of an antiseizure medication (topamax, zonegran, depakote, etc.) and an antidepressant. You'll be trying to find out both how well each medication works and how well they work together. You may see anti-inflammatory, blood pressure, antipsychotic, antidepressant and other neurologically active drugs in different combinations. For example an antipsychotic called Abilify might be used to potentiate the effects of your main prophylactic medication (I believe it's usually coupled with Depakote, though it may be Lamictal).

I very much empathize with you about wasting time out of your life to deal with the migraines. It's horribly frustrating. I know that I don't need to tell you that patience is required but it is very important to keep in mind. Many medications take a month or two or more to reach their full effect and some others that may not seem to be doing a good enough job might actually over time have a cumulative "healing" effect on your brain. The temptation to jump ship after a month or two of a drug treatment that isn't helping is overwhelming. Again I do want to point out that patience can pay off but I also have to admit that I bailed on medications fairly early on a good many times. Unfortunately later on that can lead to wondering whether a particular drug might have worked if you'd only given it more time or even having to actually go back on the drug again to find out. And that wastes more time. We all want to think of ourselves as people who are experiencing headaches rather than people with headaches. Admitting that the headaches are a part of you feels like giving up or giving in and, for a while at least, it might actually be healthier to view the headaches as being in transit--a temporary distraction from your "real" life. After a while, though, trying to keep living your pre-headache life while you're continuing to have headaches can leave you with not much of a life of either type. It's not a happy thought, and I do very much hope that your headaches get under control soon. But when or if you start seeing your life as that of a headache sufferer, you've then made the first step toward making that life better.

Best wishes,

Ben

P.S. I'll try to be available tonight if you have any further questions or things that you want to discuss. And check your email.
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Wellbutrin XL, Oxycodone, Oxycontin, Concerta (Methylphenidate), Clonazepam, Rozerem, Magnesium (1200 mg/d), Riboflavin (400 mg/d).

PRN: Ketamine nasal spray, Toradol IM, Celebrex, Haloperidol, Lodine, Zofran, Phenergan, Ambien CR
rarely: Migranal, Thorazine, DHE IM, Droperidol IM, Reglan, Provigil, triptans (Imitrex, Maxalt, Relpax, Zomig, Axert, Amerge)

I can be contacted personally via email at korbnep@gmail.com.


flicka22
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/17/2009 8:28 AM (GMT -7)   
I to am a headache suffer. I have had them most of my life. I am 44 and the last 5 years they have been the worst. they have try just about everything . and want to do the trial of the spinal cord stimulation. I am unsure of this because they have to put it in my head . i just dont like the thought of anyone in there

flicka22
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/17/2009 8:45 AM (GMT -7)   
Has anyone done the trial for the spinal stimulation ? I sure would like to hear about it. that is what they want to do to me. and i am not sure i like that idea.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/17/2009 9:27 AM (GMT -7)   
flicka22 said...
I to am a headache suffer. I have had them most of my life. I am 44 and the last 5 years they have been the worst. they have try just about everything . and want to do the trial of the spinal cord stimulation. I am unsure of this because they have to put it in my head . i just dont like the thought of anyone in there


Do you have spinal nerve problems? I ask because nerve stimulators, for headache patients, are more frequently used to treat cranial neuralgia (occipital most frequently, but supraorbital and temporal are somewhat common as well). Of course this is really just because secondary headaches are more commonly associated with cranial nerve problems than lower CNS neuralgia. Obviously headaches can be caused by problems outside of the cranial area, as may be the case with your problems. I only make this point because people very frequently confuse spinal cord stimulators with occipital nerve stimulators (see the recent thread on nerve stimulation started by tysmboo for example).

Personally I've tried occipital and supraorbital nerve stimulation to no avail. But if your headaches appear to be rooted in neuralgia (or respond to more simple treatments for neuralgia: nerve blocks, botox, etc) I highly recommend exploring the option.

Cheers,

Ben
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Wellbutrin XL, Oxycodone, Oxycontin, Concerta (Methylphenidate), Clonazepam, Rozerem, Magnesium (1200 mg/d), Riboflavin (400 mg/d).

PRN: Ketamine nasal spray, Toradol IM, Celebrex, Haloperidol, Lodine, Zofran, Phenergan, Ambien CR
rarely: Migranal, Thorazine, DHE IM, Droperidol IM, Reglan, Provigil, triptans (Imitrex, Maxalt, Relpax, Zomig, Axert, Amerge)

I can be contacted personally via email at korbnep@gmail.com.


flicka22
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/17/2009 11:41 AM (GMT -7)   
Yes they think i have that. that is what they tell me. it is something they implant in the cervical area . I have seen many nuros .lots of meds he said this is the last result to do this. he asked how far are you willing to go to get relief ? I said till something works. but not sure that far.

Nomoremigraines
New Member


Date Joined Oct 2009
Total Posts : 17
   Posted 11/17/2009 3:02 PM (GMT -7)   

Flicka22,

The symptoms of ASD and PFO (you can google) become worse in the 4th decade of life.  30% of the population has an ASD or PFO and 50% of chronic migraine sufferers have it.  In the last 2 years it has just become public knowledge about these statistics.  My physician used the Cleveland Clinic website to research.  I started having migraines everyday and they did the TEE with bubble study (you can google) and I had it!  I was given the option of surgery to repair it if I wanted to at least try to have some type of normal life w/o migraines.  I chose the repair that was done via cath lab (not open heart surgery) and from the day I had it done I haven't had another migraine.  All these people having migraines everyday would be begging their Drs to check them for this.  It was a very mild procedure I was fully awake while they did it and I had no discomfort at all.  The reward of no more migraines was worth it.  I tried all the RX meds to prevent migraines and was living a depressed worthless life doped up on that stuff.  You should at least do some research on the internet if you are serious about finding a cure. 

If you wish to contact me via email it is Charlottemcvay@hydropower1.com

Good luck!

no more migraines


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 11/18/2009 7:55 AM (GMT -7)   
Nomoremigraines said...
Flicka22,

The symptoms of ASD and PFO (you can google) become worse in the 4th decade of life. 30% of the population has an ASD or PFO and 50% of chronic migraine sufferers have it.

...

I chose the repair that was done via cath lab (not open heart surgery) and from the day I had it done I haven't had another migraine. All these people having migraines everyday would be begging their Drs to check them for this. It was a very mild procedure I was fully awake while they did it and I had no discomfort at all. The reward of no more migraines was worth it.


Flicka: Again, you've made your point about PFO--you've made a lot of repeat posts.

More importantly I want to point out a few things you said might be misunderstood.

1) The percentage of the general population with PFO has been estimated to be between 10 and 20% (slightly higher in the US). It is true that migraine sufferers are more likely than the general population to have ASD or PFO. However, this is population is made up mostly of migraineurs who experience aura. Those with migraines without aura have shown a significantly lesser incidence of ASD/PFO than those who do not experience aura. In fact, the increased incidence of this condition in migraineurs without aura may only be because of the discrepancy of how frequently the general population is screened versus how frequently migraine sufferers are.

2) While the incidence of ASD/PFO in migraineurs with aura may be higher than usual this does not mean that these heart defects actually cause migraines. The heart defect may share a common cause with migraines, or even in some way caused by neurological problems. More significantly, even though migraineurs are more likely to have PFO or ASD, studies have not shown that repairing the defect is more likely to relieve migraine symptoms than treatment with placebo.

As we've seen however, there are have been many successes with this treatment, so it is indeed worth looking into, particularly if you experience aura. But, even if the heart defect is found, most specialists are unlikely to recommend surgery unless there is a compelling reason to believe that the patient is particularly likely to benefit.

3) This is because the surgery is quite invasive. The procedure is almost always done via catheter, open-heart repair for this type of defect is extremely uncommon. Despite the contrast to open heart surgery, patching with a catheter is still quite invasive. It is threaded up to the heart through a large vein in the groin. While it's true that the procedure itself is not necessarily painful, the recovery process usually is. Quite literally, the patient must recover from heart surgery. This entails a period of several weeks of convalescence and typically a lot of pain and chest discomfort. I don't mean to imply that the possible reward may not be worth the risk (or "cost"). But everyone should know that it is not a "mild procedure".

So, by all means, those who haven't had much luck with other treatments should have a conversation with their neurologists about PFO/ASD treatment. But even for the toughest patients the recommendation will often be to not have it done.I do hope this proves to be a treatment that can help people but, for the time being, it's important to know that its efficacy is very much unproven.

Ben
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Wellbutrin XL, Oxycodone, Oxycontin, Concerta (Methylphenidate), Clonazepam, Rozerem, Magnesium (1200 mg/d), Riboflavin (400 mg/d).

PRN: Ketamine nasal spray, Toradol IM, Celebrex, Haloperidol, Lodine, Zofran, Phenergan, Ambien CR
rarely: Migranal, Thorazine, DHE IM, Droperidol IM, Reglan, Provigil, triptans (Imitrex, Maxalt, Relpax, Zomig, Axert, Amerge)

I can be contacted personally via email at korbnep@gmail.com.


Nomoremigraines
New Member


Date Joined Oct 2009
Total Posts : 17
   Posted 11/18/2009 8:39 AM (GMT -7)   
In my own personal case I did not have migraine with aura but was disabled by the intensity of having daily migraines. I had to quit my job, quit babysitting my 3 year old grandson etc.  I was begging my Dr to do something. If you've ever had migraines that severe you know what I mean.  My Dr told me the link between PFO and migraines is the  fact that unoxygenated blood goes thru the hole to your lungs and head causing them. 
 
Also Amplatzer.com has a clinical trial beginning now to prove the link between migraines and PFO.  My recovery was not painful at all.  I was sore for about a week where they went in the veins and arteries but that was it.  I was told no heavy lifting for 4 weeks.  I did great!  The Interventional Cardiologist I saw at UAB in Bham has had many many patient with severe migraines that have benefited from the repair.  I haven't had one migraine, you explain that! 
 
Most Drs want to say you have to have a stroke to be screened with a TEE w/bubble study, but more and more evidence today is showing the link to migraine patients.  They have to be severe, daily migraines.  This is not for everyone that has migraines I do agree with you.  I was on the verge of suicide due to the quality of life I had.  I can testify to you that it has changed me forever-I am a believer!!
 
I am now able to do things and have gone back to work and keeping my grandson. You can't put a price on that.  You cannot explain away the fact that I haven't had a migraine since the surgery.
 
We can agree to disagree on the topic.
 
No more migraines!

ramilin
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/19/2009 6:05 AM (GMT -7)   
I spent 16 days in MHNI, upon getting out, I asked my family doc to send me for the TEE test for a possible PFO.. you are right, it's painless to have done and is very quick. In the end, I did not have a PFO. I really wish I did though, because it's a quick easy fix. I on the other hand did alot of research and dx myself. Then found a doctor that listened. Turns out, I have Lyme Disease and Bartonella. I am now headpain free because of the antibotics for lyme.
I am a mother of 2- a 5 year old and 1 year old. Woke up with a severe headache on 7/14/08 (6 weeks after my son was born), and shortly after had severe neck pain. Eventually the neck pain decreased in intensity, but the headpain never did. I have had numerous tests and hospitalizations, and have been diagnosed with everything from intractable migranes to psuedo tumor cerebri, and now I am confirmed with LYME DISEASE (because of my insistence to find answers).

As of March 2009... I began treatment for lyme with a PICC line. As of June 2009, I am finally HEAD PAIN FREE and trying to spread the word to as many people as I can and are willing to listen. There is no need to suffer, but there is a need to find the right doctor who will listen and offer treatment.

This is from an article that I will reference at the end....
"So often it is diagnosed as the symptoms that it presents with, such as arthritis, fibromyalgia, chronic fatigue, Bell's Palsy, Parkinson's, Sjogren's, lupus, multiple sclerosis, ALS, ADD, bipolar disorder, anxiety, meningitis o...r IBS. Reading about Sjogren's makes me wonder how many people with that diagnosis have Lyme as the causative agent? .....Finally, the symptoms of Lyme disease are so unpredictable that it is often missed. People who are diagnosed with multiple chemical sensitivity, fibromyalgia, chronic fatigue syndrome, multiple sclerosis or lupus might be interested to pursue the possibility of Lyme disease. Even a disease as serious as amyotrophic lateral sclerosis (Lou Gehrig's disease) can be misdiagnosed when Lyme disease generates similar neurologic symptoms" From: http://www.massagetoday.com/mpacms/mt/article.php?id=14101

Doctors are not God. Take nothing they say as truth over your own instincts. There are answers, it's up to you to educate yourself, take control of your medical care and find answers.


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 11/19/2009 8:06 AM (GMT -7)   

Well I guess I should start doing some reading on Lyme disease as no one can find any answers to these headaches I have had for ten years.

 

Ben: at jefferson hospital I would imagine they do admits for the IV infusions you mentioned for breaking the pain cycle?

I am in ottawa, Ont. and can't find anything about this. Most are not even aware of it.

Still looking for answers to this daily severe temporal headache!!!!

Suzane

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